‘Cystic Fibrosis – The Challenges for Families, Healthcare and a New Government’

16 April 2011

Friday April 8th marked the official opening of the Cystic Fibrosis Association of Ireland’s National Conference at Knockranny House Hotel, Westport, Co. Mayo, by Taoiseach Enda Kenny T.D.

The theme of this year’s conference is ‘Cystic Fibrosis – The Challenges for Families, Healthcare and a New Government’. Officially opening the conference The Taoiseach said “This Government is very aware of the challenges that people with CF and their families face in managing their condition. We are now on day 30 of a new Government and I will not make major promised to you that can’t be delivered upon.”

Regarding the development of the dedicated CF Unit at St Vincent’s Hospital, he stated “I can tell you the new unit is on track, on time, on budget and it is my intention to make sure it remains that way.  You and your families have waited far too long for this project to open.  It can never be forgotten that Cystic Fibrosis patients are fighting for their lives...you don’t have the time for broken promises”.

On the forthcoming introduction of the Newborn Screening for CF, the Taoiseach stated “In a country with one of the highest reported instances of CF in the world, we have to get this programme off the ground.  The HSE envisages that this screening will be integrated into the existing National Newborn Bloodspot Screening this summer, and I intend to hold them to that.”

The Taoiseach concluded by stating “I would like to acknowledge the wonderful work carried out by the CFAI and I want to re-iterate my commitment to doing everything possible to secure improvements in services for people with CF.  The current economic environment makes this all the more difficult, but I will continue in my efforts to make progress as quickly as possible.”

The Taoiseach also presented a special recognition award to Professor Charles Gallagher of Vincent’s Hospital for his services to CF in particular in the development of the new ward block in St. Vincent’s Hospital which is currently under construction.

On acceptance of his Award, Professor Gallagher stated “I would like to thank the Taoiseach for his strong support and the strong support of the Minister of Health for the cause of people with CF. Your presence here tonight, Taoiseach, is a huge morale boost for people with CF, their families and the CF teams throughout Ireland who look after people with CF.

Thirty years ago Cystic Fibrosis was a disease of children and most people with CF died in childhood or adolescence. Now most people with CF reach adult life and there are now as many adults as children with CF.  But in 20 years time I want to see pensioners with CF and that has to be our goal. With your support, Taoiseach and the support of your government, we can achieve that goal”

Professor Gallagher added “People with CF and their families are among the bravest in our society. The live with CF every day of their lives with a dignity and bravery that is humbling to behold. Nations are judged by how they treat their vulnerable. Ireland will be judged by how we treat people with CF.”

Reflecting on the past year and looking at the year ahead, CFAI chief executive Philip Watt said “Cystic Fibrosis services in Ireland are normally associated with ‘bad news'. However this year for a change we can report that there has been some important progress in improving CF services in Ireland.”

"However it should be also noted that these improvements are only part of the process of bringing CF services in Ireland up to accepted EU standards and they make up for years of chronic under-funding of CF services over many decades. Further to this, some of the current HSE costs saving measures are directly impacting on CF services”.

Mr. Watt went on to outline just some of the issues in Irish hospitals which are impacting on people living with CF such as:

•    One Hospital being without a physiotherapist for 3 months with the result that many children with CF did not see a physio for this period.

•    Another hospital has lung function equipment that cannot be used because they don’t have the resources to employ a technician.

•    Another hospital has a CF adult consultant who cannot see adults with CF as he does not have a proper consulting room.

•    With new treatments for CF becoming available, will the Irish Government offer funding and support to ensure that they can be offered to people living with CF?

Despite the outstanding issues, the atmosphere at the conference was one of positivity with speakers outlining the real progress that has been made throughout the country for people living with CF in Ireland.

Some of note include:

•    October 2010: The signing of the contract for the new CF unit in St Vincent’s and the commencement of building work (opening in 2012)

•    January 2011: Announcement of planning permission being granted for a new CF adult in-patient and out-patient facility in the Mid Western Hospital, Limerick. This will cost €4.2m and will be totally funded by charitable donations through our Association

•    April 2011: The first dedicated lung transplant surgeon in Ireland is recruited – she commences later this year and should make a big difference to the rate of double lung transplants in Ireland, provided we can reverse the 35% drop in donations last year.

•    April 2011. Breakthrough in the treatment of CF with the successful Vertex drug trials which will have an impact on some Irish patients, especially in the Cork area. This story made the ‘New York Times’. It’s not a cure but it has raised more excitement among CF consultants than previous treatments.

•    June 2011: New born screening for CF will commence as part of the ‘heel prick test’ for new born babies. Many children are not diagnosed until 3 or 4 so this will mean treatment can commence immediately.

Additional awards on the night were presented by Rose of Tralee Clare Kambamettu, ambassador for CF. The first award went to Zoe Woodward for her 1 in 1,000 campaign which was launched last year and helped to raise €250,000 for a new CF unit at Crumlin Children’s Hospital; and a further fundraising award went to Juila Kerins, founding member of an annual walk committee that has raised thousands for CF over the last 16 years.  

The conference, which runs from Friday April 8th – Sunday April 10th also coincides with the charity’s ‘65Roses’ Awareness Week which runs from April 8th – April 15th Throughout Awareness Week, the CFAI will be encouraging people throughout the country to purchase a 65 Roses lapel badge for €2 to help with national and regional fundraising initiatives for CF. The badges will be available in major shopping centres throughout the country.

For further information on Cystic Fibrosis, 65 Roses Awareness Week and CFAI visit www.cfireland.ie.